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About Spina Bifida Genetics Research Project

The Spina Bifida Genetics Research Project is seeking women of children with Spina Bifida to participate in a study that will help determine the causes of Spina Bifida and lead to its prevention.

Hi, my name is Kristal Louie.  I am a study coordinator for this exciting research project and I am an American and Canadian Board certified Genetic Counselor. 

Spina Bifida Genetics Research Project

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Spina Bifida - No Fault or Blame

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Again and again I hear from mothers that they know that they are not at fault.  However sometimes I sense a flash of doubt coming through as they wonder if they are at fault somehow.  Even if you have heard it a thousand and one times from your best friend, your partner, or your doctor, sometimes you just need to hear it one more time.  It wasn't your fault.  You are not to blame.  Nobody, especially you, should carry that heavy burden of blame.

Some women did not know to take folic acid 3 months prior to getting pregnant and they had a baby with spina bifida.  Was that you?  Even though you might not have known to take folic acid, it still doesn't make it your fault.  You are not to blame.  Some women were told to take folic acid 3 months prior to getting pregnant but they still had a baby with spina bifida.  Was that you?  Are you wondering if there was something else that you were supposed to do?

The bottom line is that regardless of what you did or did not do, you never wanted to harm your baby.  That is the MOST important thing to remember.  You must remember in those brief moments of self doubt when you start to wonder if you are at fault, at blame, that you DID NOT want to wish any harm.  YOU are NOT at fault, NOT to blame.  That burden is NOT for you to carry.

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Comments

My wife took prenatal vitamins and folic acid religiously before we had our second baby and he was still born with Spina Bifida. Come to find out she needed a prescription amount of Folic Acid before getting pregnant. We have just had our 3rd baby and he is healthy and doing well. Hopefully SBGenetics will be successful and help with testing for women who need more folic acid than normal. 
 
 
 
PS i agree, it is not your fault!
Posted @ Thursday, November 19, 2009 11:02 AM by Ben Scanlan
I took folic acid and a prenatal vitamin for ever a year religiously while trying to conceive & I still had a baby with spina bifida. Before trying to conceive again, I'm to take a prescription mega dose of folic acid to help prevent this from happening again.
Posted @ Monday, December 07, 2009 10:43 PM by Star Winward
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